Hospice is basically comfort care provided at the end of a person's life. Hospice does not seek to improve or treat a condition, instead creates a comfortable, positive environment for those who wish to die at home or in a home-like setting. The Hospice approach to medical care involves providing support to the care recipient and the family in various ways while each individual deals with the many issues of accepting death and allowing the care recipient to die with dignity in the comfort of home or in a homelike setting.
The support involves providing palliative care to the care recipient--palliative care focuses on providing pain reducing medications rather than treatment for a particular condition. Hospice is care that is provided to someone who is expected to live less than 6 months. During Hospice care, any pre-established program for treatment is terminated.
The addition of hospice care does two very important things for patients and their families. First, it allows patients to set goals for their care based on their personal values. These goals often include the ability to remain at home, pain free, and to reduce the financial and emotional burden on their caregivers. Second, with the support of hospice, patients and families will be able to examine their current treatments, weigh benefits and burdens, and decide which treatments to continue and which to stop. Hospice helps empower people with a life-limiting illness to direct their medical care.
When a loved one is declining, it places a great deal of physical and emotional stress on patients and caregivers. Hospice provides emotional, spiritual and community support for the care recipient and the family to help reduce the stress helping patients to live the final months of their life in the manner that they choose.
Hospice care reduces pain and offers comfort for people who are terminally ill and provides supportive social, emotional, and spiritual services to the terminally ill and their families. Though Hospice is usually provided directly in the home of the person who is dying, there are also inpatient Hospice programs available in many communities.
Hospice involves an interdisciplinary team, composed of professionals and volunteers, coordinating an individualized plan of care for each patient and family. The hospice approach trains volunteers and family members to provide much of the patient care. This unique combination of professional and voluntary staff and family members ensures a larger scope of available services that can be directed towards sustaining the highest possible quality of life at the end of life. Care is structured as much as possible to keep families together and services are provided in the least restrictive environment possible. In-patient care, provided by a licensed hospital, licensed skilled nursing facility, or the Hospice's own in-patient facility, is kept to a minimum.
Care and services vary from agency to agency. A wide variety of services can be provided by the hospice team including:
- Nursing care,
- Medical social services,
- Physician services,
- Spiritual support and counseling,
- Home health aide and homemaker services,
- Trained volunteers for support services,
- Physical, occupational, and speech therapies
- 24-hour on-call availability,
- Hospice in-patient care,
- Respite care, and
- Bereavement support
Role of Hospice Staff
When the Hospice employees and volunteers come into a family's home, the individuals bring with them calmness and peace. When a family and the care recipient are anticipating death, all of the stages of grief and bereavement are present. Each family member will experience the passing and display their feelings differently.
The Hospice staff is trained to recognize and work through these fears and concerns with the entire family. Hospice staff have received advanced training in pain and symptom management. They understand the common emotional and grief issues that patients and families experience. They bring with them a willingness to listen, an ability to treat the care recipient with dignity and an innate ability to help the family accept the reality that their loved one is dying. The Hospice staff also help the care recipient realize that it is okay to die; that their family will be able to go on living.
The Hospice staff involves an interdisciplinary team approach that typically includes:
- The Doctor who has been providing care,
- Hospice Nurses,
- Certified Nurse Aides,
- Social Worker,
- Bereavement Coordinator, and often
- Case Manager.
Each of these individuals has been trained to look at providing comfort care to the care recipient and to look at what the family needs in the present to get through each day. Hospice staff will also provide information regarding what the family may need to think about in planning for the death of their loved one. This may involve difficult issues such as:
- Making sure that the family understands what 'DNR' orders or 'Do Not Resuscitate' orders are (orders that are displayed in the room of the dying individual directing health care providers not to perform any life saving measures)
- Recognizing the physical symptoms when death is approaching,
- Understanding the physical side effects of the pain medicine,
- Helping the family in making plans for once the death occurs by posing questions to the family such as: Will there be a funeral or memorial service? Will there be calling hours? Will the body be buried or cremated?
The Social Worker will usually help the family find resources in the community for emotional support. They will try and help the family look at the financial issues (i.e. Account information and knowing where all of the accounts may be - both banking and insurance) as well working with the family in anticipating what they will need after their loved one dies.
Licensing and Credentialing
In Virginia, a license through the Virginia Department of Health is required before operating a Hospice facility or providing Hospice services. Hospice Agencies must renew their license every year and are subject to inspection and examination by the Virginia Department of Health. Additionally, in order for a Hospice to be able to accept Medicare or Medicaid for payment, the agency must meet certain requirements set by the Centers for Medicare & Medicaid Services (CMS). There are several national accreditation agencies for Hospice Care Agencies. Two well known accrediting agencies are Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and Community Health Accreditation Program (CHAP). Accreditation by these agencies is voluntary. When searching for Hospice care, find out whether or not the agency is accredited.
Nurses of Hospice Care Agencies may also be certified on an individual basis. The National Board for Certification of Hospice and Palliative Nurses certifies Hospice Nurses. Find out if a Hospice Agency employees Nurses who hold this certification.
In Virginia, Hospice is a mandated benefit for individuals covered under Medicare, Medicaid, and private insurers located in the state of Virginia. Hospice services covered under Medicare, Part A include:
- Physician services,
- Nursing care,
- Medical equipment (such as wheelchairs or walkers),
- Medical supplies (such as bandages and catheters),
- Outpatient drugs for symptom management and pain relief,
- Short-term in-patient care, including respite care,
- Home health aide and homemaker services,
- Physical and occupational therapy,
- Speech/language pathology services,
- Medical social services,
- Dietary and other counseling, and
- Bereavement Counseling
In general, Medicare covers only treatment that relates to a "life limiting" illness and not treatment to cure or improve the terminal illness. Medications and treatments are focused on improving symptoms, overall well-being, and quality of life. The goal of Hospice Care is comfort care to help cope with an illness, not cure it. Medicare only covers Hospice Care you choose. Unless you change your Hospice provider, you cannot receive Hospice Care from a secondary or additional Hospice provider. All care that you receive for your terminal illness must be given by your Hospice team. You cannot get the same type of care from a different provider unless you change your Hospice provider. Additionally, Medicare will not cover room and board if you receive hospice care in your home, or if you live in a nursing home. In some cases, depending on the level of services provided, Medicare will cover the costs for room and board (for example, when a hospice patient is admitted to a hospital or skilled nursing facility for the inpatient or respite level of care).
In order to be eligible Hospice services under Medicare, you must:
- Be eligible for Medicare Part A,
- Receive certification from your doctor that you are terminally ill with less than 6 months to live,
- Sign a statement choosing hospice care instead of standard Medicare benefits for the terminal illness, and
- Receive care from a Medicare-approved Hospice program.
Additional services may be provided under the Hospice benefit, subject to special coverage requirements. Continuous home care may be provided in a period of crisis. This includes primarily nursing care to provide pain management. This care must entail 8 hours of care during a 24-hour day. For more information concerning the Medicare Benefit, Medicare publishes a booklet, Medicare Hospice Benefit available online or order a free copy by calling 1-800-Medicare (1-800-633-4227).
In order to receive Hospice services under Medicaid, you must be Medicaid eligible and a plan of care must be established. Care is generally provided in the home in order to avoid an institutional setting and to improve the care recipient's quality of life during death. However, individuals may reside in a nursing facility and receive Hospice Care in this setting. The following are Hospice services covered by Medicaid:
- Nursing care
- Medical social services
- Physicians' services
- Counseling services
- Home health aide
- Medical appliances and supplies, including drugs and biologicals
- Physical and occupational therapy
- Short-term, in-patient care, including short-term respite care (Respite is provided to the patient only when necessary to relieve the family members or other persons caring for the individual at home. Respite care cannot be provided when the hospice patient is a resident in a nursing home.)
Medicaid does not require you to waive your right to Medicaid payment for treatment and medical services other than those listed above. An individual receiving Hospice Care under Medicaid may still receive services related to the treatment of the terminal illness and other medical services that would be equivalent to or the same as Hospice Care, as long as the services would not be covered under the Medicare Hospice program. This means that Medicaid can cover certain services that Medicare does not cover.
Medicaid reimbursement for Hospice Care is made at one of four predetermined rates for each day an individual receives hospice care. Though there may be an option 'cap' on overall payments and the limitation on payments for inpatient care, there are four levels of care are categorized as routine Hospice Care:
- home care,
- continuous home care,
- inpatient respite care, or
- general inpatient care.
Generally Hospice costs less than care in hospitals, nursing homes, or other institutions. In hospitals and nursing homes, you are charged for all general services such as nursing, food, and basic medical supplies on a daily basis. Under Hospice Care the patient only pays for the services not able to be provided by the family. Hospice Care at home is generally provided for periods of less than 24 hours each day, with the family providing as much care as possible.
Veteran's Health Administration
The Veteran's Health Administration will cover both home and in-patient settings for eligible veterans in the last phases of an incurable disease. A medically directed interdisciplinary health care team is designated by the Veteran's Health Administration. Hospice services are available 24 hours a day, seven days a week. Bereavement care is available to the family following the death of their family member. Veteran's Health Administration also offers respite care for caregivers on a short-term basis.
Public Assistance with Medical Costs
Sometimes individuals may need help in paying out-of-pocket expenses that are not covered by Medicare or Medicaid. They may need to purchase a private insurance supplement, such as Medigap insurance, or may qualify for an assistance program. Medigap insurance is a type of private health coverage designed to bridge some of the gaps in Medicare coverage.
There are also public assistance programs called Qualified Medicare Beneficiary (QMB) Programs. These programs help qualified individuals help pay for Medicare premiums or out-of-pocket expenses. For more information about Medigap policies or QMB programs, call Virginia Department of Medical Assistance Service, (804) 786-7993 or contact the Medicare Office at 1-800-MEDICARE (1-800-633-4227) or visit Medicare.gov.
Hospice Association of America has put together a thorough consumer checklist for Hospice consumers. Here is a sample of the types of questions they suggest to help you with your search for a quality Hospice Agency. Be prepared when searching for a Hospice Agency; ask many questions and take plenty of notes.
About the Agency
- Is it currently accredited, certified, and/or licensed for hospice? For what services? By which accrediting or licensing bodies?
- Ask for documents outlining services, eligibility criteria, costs, and payment procedures, employee job descriptions. Ask about the organization's malpractice and liability insurance.
- If limited services are available from the agency, find out how they can help you access other services in the community such as home-delivered meals? Will the agency provide you with references from professionals, such as a hospital or community agency social workers?
- How will the agency work with you and your family to develop a plan of care? What are the types of services offered in a plan of care?
About the Personnel
If you are dealing with an agency, are references required by the agency and on file? Are staff certified hospice professionals?
- What are the hourly fees?
- Are there minimum hours per day or days per week required?
- Who pays for the employee's social security or other insurance?
- Are there any additional costs such as travel?
- Are there additional costs for supervision or home evaluation? Medical supplies such as dressings?
- How does the agency handle payment and billing?
(Additional editorial assistance provided by Capital Caring.)